"Nathan, My mom went to the parent conference last weekend and heard about you. How's life? I'm 13 and have your disease too. Do you play xbox?
See ya,
Ethan Ardoin"
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Ethan Ardoin
- Male
- Oklahoma City, OK
- United States
- Blog Posts (1)
- Discussions (1)
- Events
- Photos (2)
- Photo Albums
- Videos
Ethan Ardoin's Page
Latest Activity
Ethan Ardoin commented on Phyllis Ann Talbot's blog post No Title"Hello,
just wanted you to know that although I don't leave many 'comments" Hyde's story is being followed closely. Thanks for all the details. I am praying for his recovery.
"
Ethan Ardoin commented on Zofia's blog post TTP"TTP-HUS was our son's original diagnosis when he was 8 months old. It is my understanding that ttp is just another "atypical" presentation of HUS. Normally, it is adult-onset."
Cheryl Biermann left a comment for Ethan Ardoin"Hi!
Just to let you know, my access to the internet is limited now, but if you want to reach me, you may contact me through my husband's send a message. He is Bill Biermann."
Ethan Ardoin commented on Peter Brown's blog post Planning transplant using Soliris?"Hello Peter, Our 12 year old son, Ethan, has Factor H mutation. He was diagnosed at 7 months old and has had two transplants. He is on PD now (going on 5 years) We, too, are very interested in this process. Ethan is doing well right now, so we are…"
Ethan Ardoin commented on MARCIA AGUALLO BAKER's blog post New to this site! Have many questions!"Hello, Marci. It is good that you found this site. It will give you encouragement and information. You are not alone. There are people just like you who have learned to support a relative who is living with this awful disease. A new diagnosis is…"
Ethan Ardoin left a comment for Linda Burke"Thanks for touching base. Ethan was doing well before he caught the flu(regular strain) this week. He is slowly recovering. He just gets tired of being sick and tired, if you know what I mean.. Thanks for asking. I hope all is well with your family."
Linda Burke left a comment for Ethan Ardoin"Just a note to say hello and see how things are going for y'all. Best wishes, Linda Burke"
Ethan Ardoin commented on Phyllis Ann Talbot's blog post Question for any of you long term PD folks out there"Hello Phyllis,
Have you considered a "big boy" bed and setting up one of those guard nets? Or you could just place a big mattress on the floor. I know it doesn't look as nice, but it solves the problem of hurting the line if he rolls…"
Cheryl Biermann commented on Ethan Ardoin's blog post Ethan Ardoin"Hi all, we just wanted to thank you for attending the conference and Ethan you do you part and stay healthy, no flu! Wash your hands!
Ethan would you be interested in submitting something for the Christmas card project? I really want to encourage…"
Profile Information
- Birthday
- January 11
- Do you have a friend or family member diagnosed with aHUS?
- Yes
- Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
- No
- My membership request involves business interests as I seek additional aHUS information for business applications.
- no
- My child ( or myself as a patient) is best described as:
- Factor H (CFH) /Protein (Gene)
Ethan Ardoin's Photos
Ethan Ardoin's Blog
Ethan Ardoin
Ethan is very busy playing, but he's given me the "go ahead" to tell his story.
Flu-like symptoms appeared when Ethan was 7 months old. His pediatrician sent us directly to OU Children's Hospital after lab values showed critical anemia. Following six weeks in the hospital he was diagnosed with Atypical (ttp) HUS and was sent home on peritoneal dialysis. With a dialysis machine the size of a refrigerator and a 14 hour therapy, we moved his crib into our living room so he could… Continue
Flu-like symptoms appeared when Ethan was 7 months old. His pediatrician sent us directly to OU Children's Hospital after lab values showed critical anemia. Following six weeks in the hospital he was diagnosed with Atypical (ttp) HUS and was sent home on peritoneal dialysis. With a dialysis machine the size of a refrigerator and a 14 hour therapy, we moved his crib into our living room so he could… Continue
Posted on June 18, 2009 at 9:00pm — 4 Comments
Comment Wall (5 comments)
- At 12:09pm on September 24, 2010, Cheryl Biermann said…
- Hi!
Just to let you know, my access to the internet is limited now, but if you want to reach me, you may contact me through my husband's send a message. He is Bill Biermann.
- At 10:35pm on March 1, 2010, Linda Burke said…
- Just a note to say hello and see how things are going for y'all. Best wishes, Linda Burke
- At 9:23am on July 9, 2009,
Phyllis Ann Talbot said… - Hi Christie - thanks for the info - yeah - we've gone straight to the emergency room and had labs immediately following both times and they have been 'normal' (or as normal as ours ever are! ;-) We normally have labs once a mth and had does have a port and lidocaine - but all his electrolytes, calcium, K, and phos seem pretty stable. Both of his seizures have seemed like textbook febrile seizures - how unlucky can the poor kid get! Still seems like a little too much of a coincidence to me - but we'll see what the neurologist says - when we see them in 2 mths!! ughh! Anyway - thanks for the info...
- At 9:39pm on June 18, 2009, Linda Burke said…
- Thanks for adding your story to the website - all those trials and Ethan still has that great smile in the Kamp Kidney photo! He must be quite a remarkable young man, and who seems blessed with a very supportive family. We applaud your family's positive attitude and while we personally can't "find a cure", this parent group is gathering strength in numbers as we endeavor to increase contact opportunities with researchers and medical personnel interested in helping the aHUS community find answers to this complex disease. Feel free to post information (maybe the transplant forum?) and add comments/questions as you see fit. ps Love the pony photo! Linda
- At 8:25pm on June 17, 2009, Linda Burke said…
- Hi Ethan! Welcome to the new interactive website for aHUS families and friends - we hope you find it full of information and support. That's a pretty remarkable trophy in the photo you posted - WOW. We'll be looking forward to hearing your story!
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.
Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.
NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.
************************
NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.
Did you know...
CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
Help us fight the battle
Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com
Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
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